Mets Day 950: Today's CT scan was equivocal

Today I had another scan at NIH. The scan was equivocal:

1. The "previously identified pulmonary emboi are less well seen or decreased/resolved since prior study 10/6/2014." Dr. Apolo and her fellow interpreted this to mean that the blood thinners have been working, that I should stay on the Xeralto, and that I should watch for more blood in my urine. The fellow noted that my labs were normal, and that there was no blood detected in my urine sample.

2. The radiologist who read the scan did not document my supraclavicular nodes, which no one could explain. Dr. Apolo personally looked at the images and measured the short axis of my largest node to be 1.42 cm -- less that 10% larger than the 1.3 cm in the last scan, and thus within the range of "stable", but larger nonetheless. But it's still not large enough to enter a clinical trial, so we'll continue to hang loose.

3. The radiologist noted "nonspecific sclerotic densities in the skeletal structures," and questioned whether that was a result of metastatic cancer. Dr. Apolo said that was normal arthritis, and to not worry about it. Most of my prior scans also have noted my changing bone densities.

4. The radiologist also noted "nonspecific hypodensity in the liver, unchanged. The focus is too small to characterize on CT." Prior scans have also suggested there could be small tumor nodes in my liver, but if they are there, it's not large enough to confirm. But tumors in the liver are the most likely place for mets BC to spread. My combined PET-MRI in September did not observe uptake in my liver, suggesting that there was no metastatic activity at that time. But still.

Dr. Apolo scheduled me for a follow up CT scan in two months. She specified that my neck be included next time, since several of my torso scans have managed to barely capture my supraclavicular nodes. I noted that I'd be visiting with Dr. Aragon-Ching next week, and Dr. Apolo said thatthe two of them would continue to consult on my case.

On balance, this scan is "same old, same old." Which just goes to show how inured I have become to the complex world of metastatic cancer. A scan like this probably would freak out someone who previously had a clean bill of health. To me, it's a shrug of the shoulders and on to Chipotle.

Mets Day 946: Blood in my urine again?!

Almost exactly three years ago - November 12, 2011 - I had blood and bloody mucus in my urine. That started my one-way trip down the rabbit hole of bladder cancer. Since then, I've had eight surgeries, two rounds of chemotherapy, 17 CT/PET scans, two organs removed, ongoing nocturnal incontinence, retired from my legal practice, been classified as totally disabled, and developed a greater spiritual understanding of life and death.

Last night, I saw another bloody chunk issue with my urine. I was surprised at how fast I was spun back to November 12, 2011. This roller coaster just doesn't stop, I thought. At 8:40 pm I emailed doctors Apolo and Aragon-Ching:

This evening I had some bright red bloody mucus in my urine. I don't know if it is related to my switch to Xarelto, or something else related to my neobladder, or perhaps my kidneys, or nothing to worry about. I have a CT scan and clinic appointment with Dr. Apolo on Tuesday, November 18. Please advise whether I should do anything prior to then. Thank you for your ongoing care.

At 10:06 pm, Dr. Apolo responded:

Likely due to Xarelto. Please monitor the blood in your urine over the next 24-48hrs, if it worsens or does not improve you will need to be assessed. Gloria will call you tomorrow morning to follow-up.

 At 6:36 am this morning, Dr. Aragon-Ching added:

I agree with Dr. Apolo...most likely from Xarelto, but also ensure adequate hydration...who has been the Urologist you've been seeing mostly? is it Dr. Schoenberg or Dr. Frazier? we may have to re-connect with them if the bleeding doesn't ease up ....and see what the scan shows

Wow. I'm glad that my doctors are as conscientious as they are, responding to emails late at night or before dawn. I replied to both at 8:14 am:

Thank to both of you for your quick response. So far I've seen no additional blood. I'll let Gloria know if I see more, otherwise I'll plan on seeing Dr. Apolo on Tuesday. I have not seen a urologist since early 2013 (it was Dr. Michael Phillips, one of Dr. Frazier's colleagues who specialized in incontinence, who helped me with the imipramine). I understand that Mark Schoenberg left Hopkins earlier this year to become chief of urology at Einstein/Montefiore. I'm ok with going back to Dr. Fraizer if needed, or I could reach out to Dr. Trinity Bivalaqua at Hopkins, who repaired a stricture in my neobladder in September 2012.

Plus ca change, plus c'est la meme chose.

Mets Day 942: I'm also allegic to fondaparinux

Friday night in injected myself with the fondaparinux (Arixtra) provided to me by NIH. Saturday morning I woke up with an impressive rash around my injection site, on the right side of my abdomen. My preexisting rash that had been triggered by the Lovenox was on the left side. I continued with the injections on Saturday and Sunday, watching as my rash spread each day. Sleep was difficult as it itched constantly. It was also painful as I rolled over in bed.

This morning I called the NIH clinic and let them know what was going on. After several calls and consultations with Dr. Apolo's staff, I was told that I should switch over to Xarelto (rivaroxaban); however, NIH did not have that drug in their fomulary. Dr. Apolo sent an email to Dr. Aragon-Ching, who quickly called in a prescription for me. Looks like I'll be able to say goodbye to the injections, bruising, and rashes. Boo hoo.

These are the first two drugs that I've had a reaction to. Strange. I'm glad there is an alternative. Yet, in the past month, I've noticed a number of commercials by plaintiffs' lawyers for clients who have taken Xarelto and had unexpected bleeding. As a lawyer, I am no fan of class actions -- I've heard a number of class action attorneys say it's the best type of legal practice, "because there are no clients you have to answer to" -- but I nevertheless will be aware of excess bleeding. If nothing else, it gives me an excuse to not shave.

Mets Day 939: Apparently I'm allegic to Lovenox

For the past month I've been injecting myself twice daily with enoxaparin (Lovenox) - mornings on the left side of my abdomen, evenings on the right. I've built up an impressive collection of track marks and bruises from the injections. About a week ago, I noticed a small rash on the left side of my abdomen. I assumed that it would go away, but it gradually has increased in size. Today I sent an email to Dr. Apolo describing the rash, and enclosing a picture. Less than an hour later, one of the physician's assistants from NIH called me and asked me to come in immediately. Alrighty then.

The NIH oncology clinic was empty when I arrived -- all the patients had already gone home, and the staff was wrapping up for the week. I sat down with the PA and a pharmacist, who puzzled through the various possible causes of my rash. After ruling out poison ivy, or a new laundry detergent, or an insect bite, or whatever else they could think of, they concluded that my rash probably was being caused by the Lovenox. According to the pharmacist, a delayed reaction to enoxaparin is "not unknown in the literature," although she'd never personally seen one. Lucky me: another one off case.

We discussed alternative blood thinners, including wayfarin and Xaralto. The pharmacist said that wayfarin had too many downsides. She also said that NIH did not think that Xaralto had been sufficiently tested in patients with metastatic cancer, although she allowed that it soon might be. She decided to change my blood thinner to fondaparinux (Arixtra), and I was provided with two weeks worth of syringes. One upside of fondaparinux is that I only have to inject it once a day.

I'm supposed to closely monitor my rash to see if it goes away. I have my next scan scheduled for November 18, and I'll see Dr. Apolo the same day, so we'll revisit what blood thinner I should stay on at that time. Oh, and we'll also find out whether or not my cancer is growing. No big deal (hopefully).